Childrenstwostandardsofcare5.3.05.pdf

Lyme Disease Treatment Standards and Children

by Lorraine Johnson, J.D., M.B.A.

Lyme disease is a bacterial infection typically transmitted by the bite of a tick, although transplacental transmission

has been shown to occur in some cases. Twenty-five percent of reported Lyme disease cases are children. In

addition to Lyme disease, ticks may transmit a number of other diseases, including anaplasmosis, babesiosis,

bartonellosis, and ehrlichiosis, which make the disease more difficult to treat. The symptoms of Lyme disease

mimic a number of other diseases and disorders and include a wide variety of musculoskeletal, cardiac, neurologic,

neuropsychiatric and cognitive symptoms. When treated promptly, the disease responds well to treatment.

However, when the diagnosis is delayed, as is frequently the case, the disease may progress to its chronic form that

is more difficult to eradicate and less responsive to treatment.[1]

Parents of children who are seriously ill with the persistent form of Lyme disease need to navigate a host of

complex medical decisions. Problems may arise when state, school, or other authorities involved with the child

have insufficient information about the problems associated with the diagnosis and treatment of chronic Lyme

disease or the existence of two standards of care. Because of these misunderstandings, parents sometimes find

themselves involved with child protection agencies or school districts filing inappropriate charges of child abuse or

neglect.

By law, parents are granted the "primary role" in the "upbringing of their children".[2] In the absence of child

abuse or neglect, a child’s parents have the exclusive authority to determine the proper course of medical care

and other issues concerning the child’s welfare. While the legal definitions defining the nature and scope of child

abuse and neglect vary from state to state, all child protection statutes are intended to protect children from

serious harm within the family.

Mandatory reporting laws imposed on educators and health care providers combined with low “reason to suspect”

standards and sanctions for failure to report, necessarily result in a system-wide bias towards false reporting. [3]

In 1997, approximately two-thirds of all child abuse investigations were determined to be unsubstantiated.[3] The

Herculean task set for those involved in child protection and welfare is to balance the competing goals of

protecting children from harm and protecting innocent parents, children, and families from damaging

investigations and disruptive separations. The gravity of the alleged offense should play a large role in

determining whether or not to pursue a claim.[3] Potential conflicts-of-interest and bias that may underlie charges

must also be considered. While the role of the disgruntled ex-spouse in instigating child abuse allegations is more

widely recognized, claims by insurers, physicians, or school districts may be prompted by more subtle

professional bias or economic incentives (e.g., avoiding expensive diagnostic tests, treatment, or educational

accommodations) or just lack of knowledge about Lyme disease.

Inappropriate allegations of child abuse or neglect in Lyme disease cases typically arise when school or medical

facilities are not familiar with the two standards of care or the complex presentation of persistent neurologic Lyme

disease in children. The optimum antibiotic regimen and duration of treatment for chronic Lyme disease has not yet

been determined, and two standards of care have arisen for the diagnosis and treatment of chronic Lyme

disease.[1] Both standards of care are reflected in peer reviewed evidence-based guidelines posted on the National

Guidelines Clearinghouse sponsored by the U.S. Department of Health and Human Services, which also provides a

summary of the two standards and a comparison chart.[4-6] The guidelines promulgated by the Infectious

Diseases Society of America (IDSA) advocate short-term treatment approaches and rely heavily on laboratory tests

for diagnosis.[7] In contrast, the guidelines promulgated by the International Lyme and Associated Diseases

Society (ILADS) promote longer term treatment based on the patient’s response to treatment and relegate

laboratory testing to a supporting role.[8] Significant specialty bias exists between the two treatment approaches

such that a diagnosis or treatment plan based on one standard of care is frequently repudiated by physicians

following the other standard of care.

The polemic nature of the debate between treatment approaches and the specialty bias that permeates the

treatment of persistent Lyme disease can create conflicts between parents (particularly divorced parents), between

parent and school district, and between the parent and child protection services agencies. Hence, it is critical for

those involved in the child’s education and protection to understand the two standards of care, who is entitled to

choose between treatment options, and what constitutes child abuse or neglect.

The United States Supreme Court has held that patients have a fundamental right to make medical decisions and

control what happens to their own body under the concept of patient autonomy.[2] Children are regarded as

lacking the capacity for making these decisions on their own, and generally parents make medical decisions on

their behalf. Although the presumption of parental control over the child is very strong, the state may intervene

under the doctrine of parens patriae in very limited circumstances to protect the welfare of the child, primarily

when the child is being abused or neglected. [9] The U.S. Department of Health and Human Services explains

the deference to parental judgment in medical treatment matters as follows:

The decision to provide or withhold medically indicated treatment is, except in highly unusual

circumstances, made by the parents or legal guardian ... This is the parents' right and responsibility ...

The parents' role as decision maker must be respected and supported unless they choose a course of

action inconsistent with applicable standards established by law. [10]

The United States Supreme Court agrees that “absent a finding of neglect or abuse,… [parents] retain plenary

authority to seek …care for their children.” [2]

When two standards of care exist regarding the treatment of a child’s medical condition, the selection between the

available treatment options belongs to the parents. The treatment of the child in accordance with any approach

within the medical standard of care is “consistent with applicable standards established by law” and does not

constitute child abuse. Child abuse in the medical context (e.g., Munchausen by Proxy) requires an element of

intentionality and deception. In short, the parent or parents must be fabricating symptoms in the child with full

knowledge that the child does not have the condition.[11, 12] Absent this level of culpability, the parents’ right to

make medical decisions for a minor child cannot be abrogated by teachers, schools, child protection agencies, or

even other physicians who disagree with the treatment selection made. Moreover, respect for the parents’

fundamental right to make autonomous medical decisions on behalf of their child means that allegations of child

abuse must be evaluated in accordance with the standard of care selected by the parents and that any physician

consultations reflect the standard of care selected by the parents. In the context of 504 and IDEA

accommodations, the school district should be sensitive to the standard of care selected by the parents.

Disagreements between parents regarding treatment may arise when parents are divorced. The parent who has

sole custody generally is entitled to make medical treatment decisions unilaterally, while medical decisions are

shared when there is joint custody.[13] Disputes should be resolved like any other child custody dispute, with

resort to the judicial system if necessary.[13] There is a growing trend toward including minor children in the

decision making process. For instance, the American Academy of Pediatrics recommends obtaining consent from

children 13 or older. Moreover, the United Nations Convention on the Rights of the Child requires that the child’s

views be given “due weight” “according to the age and maturity” of the child.[2] Some states recognize and grant

“mature minors” treatment decision rights as well. [9, 14] Hence, based on the maturity of the child, those

involved in resolving disputes between the parents may consider the viewpoint of the child. When disputes arise

in the course of treatment, treatment should be continued pending resolution of the dispute to avoid disruption of

the treatment plan as part of maintaining the status quo.

In summary, the selection between legitimate medical treatment options does not constitute child abuse. Care

should be taken to ensure that child abuse claims are evaluated in accordance with the medical standard of care

selected by the parent, bearing in mind the considerable specialty bias that may exist among physicians regarding

the diagnosis and treatment of tick-borne diseases. When parents disagree, resolution may require judicial

intervention as in other custody disputes. Finally, those involved in determining the validity of child abuse or

neglect claims need to be mindful of the potential personal, professional, or economic conflicts-of-interest or

biases that may underlie child abuse claims.

Lorraine Johnson is a practicing attorney and business consultant in Los Angeles, California. She is the Executive Director of

the California Lyme Disease Association and a member of the Advisory Board of the Lyme Disease Association.

References

1. Johnson, L.B. and R.B. Stricker, Treatment of Lyme disease--a medicolegal assessment. Expert Rev Anti-infect Ther,

2004. 2 (4): p. 533-57.

2. Wisconsin v. Yoder, 406 U.S. 205, 232 (1972); accord Prince v. Massachusetts, 321 U.S. 158, 166 (1944).

3. Reppucci, N.D. and C.S. Fried, Child abuse and the law. UMKC L. Rev., Fall, 2000. 69 : p. 107.

4. Agency for Healthcare Research and Quality (AHRQ): U.S. Department of Health and Human Services, Comparison of

guidelines , in National Guidelines Clearinghouse . www.guideline.gov/compare/compare.aspx.

5. Agency for Healthcare Research and Quality (AHRQ): U.S. Department of Health and Human Services, Brief Summary:

Practice guidelines for the treatment of Lyme disease (International Diseases Society of America) , in National Guidelines

Clearinghouse . 2000. www.guideline.gov/summary/summary.aspx?doc_id=2672&nbr=1898#1188.

6. Agency for Healthcare Research and Quality (AHRQ): U.S. Department of Health and Human Services, Brief Summary :

Evidence-based guidelines for the management of Lyme disease. (International Association of Lyme and Associated

Diseases Society) , in National Guidelines Clearinghouse . 2004.

www.guideline.gov/summary/summary.aspx?doc_id=4836&nbr=3481#1188.

7. Wormser, G.P., et al., Practice guidelines for the treatment of Lyme disease. The Infectious Diseases Society of America.

Clin Infect Dis, 2000. 31 Suppl 1 : p. 1-14..

8. The International Lyme and Associated Diseases Society (ILADS), ILADS Evidence-based guidelines for the

management of Lyme disease. Expert Rev. Anti-infect. Ther., 2004. 2 (1): p. S1–S13.

9. Hanisco, C.M., Acknowledging the hypocrisy: granting minors the right to choose their medical treatment. N.Y.L. Sch. J.

Hum. Rts., 2000. Summer (16): p. 899.

10. 45 C.F.R. pt. 1340 (1985) .

11. Pragnell, C., Fabricated or induced illness in children. Open mind is needed regarding origins of childhood symptoms and

illnesses. Bmj, 2002. 324 (7329): p. 114.

12. Rosenberg, D.A., Munchausen Syndrome by Proxy: medical diagnostic criteria. Child Abuse Negl, 2003. 27 (4): p. 421-

30..

13. Weber, P., Informed consent for minor patients. OMIC Risk Manager Digest, 1999. Summer ..

14. Schlam, L. and J.P. Wood, Informed consent to the medical treatment of minors: law and practice. Health Matrix, 2000.

Summer (10): p. 141.

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